Chief Investigator:

Dr Jane Cross (University of East Anglia), Professor Chris Fox (University of Exeter/Norfolk and Suffolk NHS Foundation Trust – NSFT)

Funder:

National Institute for Health Research – NIHR. Programme Grant for Applied Research (NIHR201076)

Sponsor:

University of Exeter

Health Condition or Problem Studied:

Support for carers of people with dementia

Intervention:

The Dutch Partner in Balance (PiB) programme is a self-management programme for caregivers of people with dementia. PiB combines face-to-face coaching with tailor-made thematic online modules. The aim of the CareCoach programme is to adapt and test the PiB programme for carers of people with dementia in the UK.

Study Design:

• Work Package 1 (WP1):

Participants will be either family carers of people recently diagnosed with dementia, or dementia-experienced staff. They will take part in a qualitative interview via Zoom or MS Teams lasting between 1-2 hours during which they will be asked about their experiences of caring for a person with dementia. They will also be given access to the PiB online resources and asked to navigate/view the modules, prompting discussion about its relevance and usefulness in their circumstances. Using Experience Based Co-Design (EBCD), clips and transcripts from the interviews will be discussed in 3 focus group events (workshops):

◦ Carers workshop (n=10)

◦ Staff workshop (n=10)

◦ Joint carer and staff workshop (n=10 from previous workshops)

The PiBUK intervention will be reviewed and adapted according to discussions and outcomes of the co-design events.

• Work Package 2 (WP2):

This is a mixed methods process evaluation assessing:

◦ WP2a - Service implementation using the NOMAD instrument and interviewing dementia staff and service providers

◦ WP2b - Qualitative interviews of the carer experience involved in WP3 and WP4.

• Work Package 3 (WP3):

This is an assessment of participant identification, recruitment processes, operational procedures, outcome measures and data collection in order to inform the main RCT in WP4. 45 family carers across 7 sites will be randomly allocated to receive the PiBUK intervention (as developed in WP1) or usual care controls. Follow-up will be at 6 months post randomisation using participant reported questionnaires.

• Work Package 4 (WP4):

A randomised controlled trial with internal pilot to test the efficacy and cost effectiveness of the adapted PiBUK intervention. 624 family carers across up to 26 sites will be individually randomised to receive either the PiBUK intervention or usual care in the community. Follow-up will be at 6 months post randomisation using participant reported questionnaires.

Target Sample Size:

• WP1 - 20 family carers of people recently diagnosed with dementia and 20 dementia experienced staff

• WP2a - 5 dementia experienced staff each from WP3 and WP4 will be interviewed

• WP2b - 5 carers receiving the intervention in WP3 and 25 carers receiving the intervention in WP4

• WP3 - 45 informal/family carers across 7 sites

• WP4 - 624 informal/family carers across potentially 26 sites.

Status:

• WP1 - Developing ‘Partner in Balance’ (PiBUK) for UK use. Recruiting and interviewing.

• WP2 & WP3 – Under development. Due to start Aug 2022

• WP4 – Due to start Dec 2023

Contact details:

Email: carecoach@uea.ac.uk​

Study mobile: 07599 926354

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